Doctors report sharp rise in potentially deadly, non-Lyme infections
By Maryn McKenna
Wild raspberries lured Jacqueline Moore over the wall of her new garden in Westchester County, New York. It was July 2008, and Moore, her husband and their two small kids had just moved up from Manhattan. She was painting the kitchen, up on a ladder, when she glanced out the window and spotted the flash of red. She was thrilled: This was what they had left the city for. She called the kids, and they hopped over the wall. They picked raspberries every day for two weeks.
About the time the berries ran out, Moore—who was 34 then, a personal trainer and marathoner—started feeling an achein her neck and shoulder. She thought painting the ceiling was to blame; or maybe it was the borrowed mattress she and her husband were sleeping on. Then she noticed herself getting irritable. Family were visiting to see the new house, and “I was having trouble taking care of the guests,” she recalls. “Every day, I would be twice as tired as I had been the day before.”
By August, a rash, an irregular crimson patch, bloomed on her back. She thought she knew what that meant: A round red rash can signal Lyme disease, a bacterial infection transmitted by ticks. She did not remember a bite, but she found a local doctor. He thought she might have shingles, a painful rash caused by a virus — but to be safe he gave her doxycycline, a standard antibiotic for Lyme. It had no effect — instead, she got worse.
“At night, I had fevers and chills, and I couldn’t move my head because the headaches were so bad,” she recalls, tearing up at the memory. Moore’s worried family took her to the emergency room of a small local hospital, where doctors rushed her into isolation. “My husband would come into the hospital room and want to open the shades, and I’d say, ‘I can’t handle the light,'” Moore says. She was too weak to shower alone; her mother and husband had to hold her up.
Dramatic increases in infections
It was days before she learned what was wrong. She did have Lyme disease, doctors told her; the rash was indeed a telltale clue. But that was not as important as what else she had: babesiosis, an infection caused by a parasite that lives in red blood cells. As with Lyme, ticks transmit babesiosis. But unlike Lyme, it can be fatal.
Even after 10 days in the hospital and treatment with anti-parasitic and antibiotic drugs, Moore’s alarming symptoms continued. She woke up drenched from night sweats, her skin took on a yellow tinge, and she spotted blood in her urine, a sign of red blood cell breakdown. Only after she consulted with infectious-disease specialists at a second hospital, Westchester Medical Center in Valhalla, and took two more drug regimens did the effects finally begin to wane.
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Babesiosis (“buh-BEE-zee-o-sis”) used to be rare, except off the Massachusetts coast, where decades ago it earned the name Nantucket fever. In 2001, only five cases were reported in the lower Hudson Valley, where Moore lives. But the year she got sick, doctors diagnosed 120 cases—a 20-fold increase.
“It is so new in our area, it has flown under the radar,” says Moore’s physician Gary P. Wormser, M.D., the chief of infectious diseases at Westchester Medical Center and New York Medical College and head of a team researching tick diseases. “A lot of patients haven’t heard of it, and a lot of doctors don’t know about it.”
In fact, babesiosis is one of a raft of under-the-radar tick diseases spreading across the United States.
“We’ve seen pretty dramatic increases,” says Jennifer McQuiston, an epidemiology team leader in the vector-borne disease division of the Centers for Disease Control and Prevention in Atlanta. “We’re told to get out and exercise and enjoy nature, so we need to be aware.”
Most people have heard of Lyme disease, which appeared among residents of that town in Connecticut in the mid-1970s and now affects more than 35,000 Americans per year. Most Lyme cases occur in the Northeast and upper Midwest; if you don’t live there, you might be safe from Lyme but still at risk for other diseases. Cases of a tickborne illness known as ehrlichiosis grew from 200 to 957 nationwide—a 378 percent jump—between 2000 and 2008, according to the CDC. The infection anaplasmosis nearly tripled in the same period, and Rocky Mountain spotted fever quintupled. The new disease STARI (southern tick-associated rash illness) has spread across the South, and strains of an infection called rickettsiosis have hit the Gulf and Pacific coasts.
All of these non-Lyme tick diseases attack victims in a similar way, bringing on fever, headache, and muscle and joint pain — making it easy to misdiagnose them as anything from flu to meningitis, Dr. Wormser says. If the patient remembers finding a tick, or develops a rash, that’s a big clue. If not, “it is somewhat common for these to be missed. The symptoms resemble so many other common viral infections,” says Gregory A. Storch, M.D., a pediatric infectious-disease specialist at Washington University in St. Louis, which created a multidisciplinary tickborne-disease research team because cases have surged there.
This lack of awareness can be deadly. Tickborne infections cause only minor or no symptoms in some people but become dire in others. Rocky Mountain spotted fever, for one, almost always results in hospitalization. And among people who develop symptoms of babesiosis, 5 percent to 10 percent will die. The death rate reaches 20 percent in those whose immune system is compromised — like Moore, whose spleen was removed because of a tumor when she was 14.
“Although babesiosis is less common than Lyme, you can argue that it creates as big a health burden, because of its severity and fatality rates,” says Peter J. Krause, M.D., senior research scientist at the Yale School of Public Health in New Haven, Connecticut. “There are more cases than we previously thought, and babesiosis is also the number-one reported cause of infections through blood transfusions in the United States.” But because medical awareness has not kept up, patients have been overlooked, undertreated and taken by surprise when their enjoyment of the outdoors—a hike, a run, a round of golf, their own backyard—turns into a life-altering threat.
Are the outbreaks our fault?
Some of the sharp rises in tick disease cases could be due to better counting and diagnostic tests, McQuiston cautions. “But we also have a suspicion it could be differences at the ground level, a changing ecology.” What’s especially troubling is that these ecological changes—which wildlife researchers confirm—aren’t natural or accidental. “Unfortunately, there is mounting evidence that the increase in risk for exposure to tickborne diseases is a consequence of the ways humans modify the environment we live in,” says Brian F. Allan, Ph.D., assistant professor of entomology at the University of Illinois at Urbana-Champaign. For starters, Allan says, we’re seeing more contact between ticks and people, possibly because we’re moving farther into woody areas. And ticks and the wildlife they feed on are thriving because we’ve created appealing backyards for them to live in.
To fully understand how we’ve increased our own risks, you have to know how tickborne diseases spread. Ticks bite and draw blood only three times in their life. For most species, the first and second meal is from something small, a mouse or a chipmunk, and the third is usually from something larger, such as a white-tailed deer, a dog — or a human being. When ticks take blood, they can pick up disease organisms from the animal they bit and then pass them along to whatever they bite next.
Risk spike in spring and summer
The chance you’ll be infected spikes in the spring and summer, when you are outside more and wear less clothing and when ticks are also most active — particularly eager, hungry young nymphs. The risk is highest when you are in the kind of landscape ticks and their hosts prefer: shady forests, places with lots of moist leaf litter and areas where woods transition into meadows or lawns. In other words, the suburbs.
The northeastern communities most plagued by Lyme disease often focus their ire on the deer population, carving up open land into developments that seem less friendly to the animals. Although fewer deer would help a lot, Allan says, it wouldn’t be a cure-all: Another key animal in the life cycle of a tick is the white-footed mouse it bites earlier in its life. It’s almost impossible to make a patch of land too small for mice to survive on; plus, ecologists theorize that when fewer other species live on a parcel, the rate of disease in mice will go up. Overdevelopment changes the land’s natural mix of animals — its biodiversity — and the result can be more of the creatures that spread tickborne disease, such as mice, and fewer of the animals that don’t, such as squirrels.
Even living in the city turns out not to be a protection. “If someone [with a tick disease] tells me they live in an apartment, I ask if they play golf,” says Farrin A. Manian, M.D., chief of the division of infectious diseases at St. John’s Mercy Medical Center in St. Louis. (One study found that people with worse golf scores had a higher risk for exposure—presumably because they spent more time in the rough.) Meanwhile, Allan also hypothesizes from his research that an invasive honeysuckle common in city parks is so attractive to deer that the animals will migrate into parks to sleep under it — carrying ticks with them — and then wander out into suburban neighborhoods to feed.
In New York City, 36-year-old Bernadette Durham was working as a marketing executive and fund-raiser when her neck began to ache. “I thought it was stress. I’d just broken off a relationship, and I had taken on a new role at my firm, so I was traveling a lot,” says Durham. But when she began to feel numbness and tingling in her legs, she grew scared.
Her family, who live in suburban New York, had all had cases of Lyme disease that responded to antibiotics. They thought she had it, too. But when she went to an ER, the resident who treated her dismissed the possibility, not understanding that even if Durham couldn’t remember a tick bite, city life could have exposed her. “I have a dog,” she says she told the doctor. “I run in Central Park. I ride horses in the suburbs and spend time on Long Island.” She went from specialist to specialist for more than two years, growing ever sicker with fatigue, brain fog and dizziness. Although she was tested for Lyme, the findings were never conclusive, and no one made the connection that a Manhattanite might have another kind of tickborne disease.
Yet science shows ticks have been hopping a ride on wildlife into new areas. At a medical meeting last June, researchers for the state of New York reported that the tick that carries ehrlichiosis is moving from Long Island into New York City and the rest of the state. After the tick that carries anaplasmosis, babesiosis and Lyme disease invaded lower Michigan in 2002, a study documented its rapid spread in this new area, says author Jean I. Tsao, Ph.D., assistant professor of disease ecology at Michigan State University in East Lansing. Oregon and Tennessee both recently reported their state’s first cases of babesiosis, even though the tick species that carries it had never been seen where the victims live.
“As populations of ticks increase in endemic areas, there are more ticks to be dispersed outward, like cups of ticks spilling over,” Tsao explains. “Deer have a particularly high capacity to spread ticks because they can carry adult females that can lay 1,000 to 3,000 eggs. Similarly, though one bird might not carry many ticks, it’s possible that thousands of migrating birds could pick up ticks from one area and drop them off in another.” Climate change might also be helping some tick species move northward, she adds, as warming causes summers to grow longer.
Dr. Manian says he has seen steady growth in tickborne diseases, especially ehrlichiosis, in his St. Louis practice. Yet patients are invariably surprised by the diagnosis. “A lot of people are almost shocked that they could get anything from ticks,” he says. “They remember getting tick bites growing up and never coming down with anything.”
An elusive diagnosis
As soon as you feel your first symptoms of a tick infection, the clock starts: Getting treated quickly with the right antibiotics or antiparasitics can be critical to preventing symptoms from escalating. Half of the deaths from Rocky Mountain spotted fever in kids, for example, occur within nine days of when the symptoms started.
You might wait a few days, at least, before seeing a doctor. And when you do, it could take even more time for you to get a precise diagnosis: There are no reliable rapid tests that can indicate every important tick-related infection; the lab assays that confirm the diseases may take days to deliver a result, if doctors even think to order them in the first place.
Further complicating matters, a tick often picks up multiple pathogens as it hitchhikes from animal to animal — and when it bites a human, it might transmit more than one. It may be that people with these coinfections—for example, Lyme plus ehrlichiosis or babesiosis — are sicker when symptoms surface and take longer to recover, says Dr. Wormser, who was the lead author of clinical guidelines for treating tickborne disease issued by the Infectious Diseases Society of America.
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It would turn out Bernadette Durham had multiple tick infections. Yet diagnosis remained elusive, even as her symptoms worsened. “I was literally crawling on the floor from the bed to the bathroom. I couldn’t walk my dog,” she says. Her weight dropped to 96 pounds on her 5-foot-7-inch frame. One doctor told her she was anorexic; another said she had a neurological disorder; a third, a heart disorder; a fourth diagnosed multiple sclerosis. Finally, two and a half years after her symptoms began, a physician determined she had Lyme, with the complex symptoms that can develop when the disease is not treated quickly. Later tests showed she had ehrlichiosis as well.
Because Lyme is so common, doctors often assume it is the sole problem in patients with tickborne infection, not recognizing newer diseases, says Durham’s doctor, Daniel J. Cameron, M.D., an internist and epidemiologist in Mount Kisco, New York, and past president of the International Lyme and Associated Diseases Society. It’s possible that undetected coinfections could help explain the medical mystery that is known as category 4, or “chronic,” Lyme. Some sufferers contend their symptoms continue to affect them after the standard treatment of two to four weeks, but not all doctors believe Lyme persists. What if some of these patients continue to struggle because they have another tick-borne infection? “You have to examine whether you have prescribed appropriate antibiotics for each infection that might have been in that tick,” Dr. Cameron says. “The problem is that doctors are reluctant to treat any more than the bare minimum, and they lose the opportunity to treat people in a timely manner.”
After treatment for both infections, Durham has improved, though not recovered. She is on a medical leave of absence; unable to afford her Manhattan apartment, she moved in with her mother. She still fatigues easily, and her eyesight and attention are affected. “What makes me mad is I knew something was wrong back in 2006, and no one looked at it,” she says. “I want people to know they should listen to their body and not give up. They are not alone if they are going through this.”
The sickness spreads
The tick-disease threat doesn’t end when you get bitten: People exposed to these pathogens can pass them through their blood—including to babies in the womb and to recipients of blood transfusions. That’s a scary thought, but in most cases, pregnant women with a history of tickborne disease or symptoms can take antibiotics safely and prevent transmission; likewise, blood banks vet donors and often turn away those who have tick disease in their past. But in one case—babesiosis—preventing transmission is challenging.
Babesiosis symptoms often fade over time, and in one quarter of adult cases, people never notice symptoms at all. So there could be hundreds of Americans who aren’t aware they are infected with the parasite—and so aren’t taking precautions to avoid passing it along, says David A. Leiby, Ph.D., head of the transmissible diseases department at the American Red Cross Holland Laboratory in Rockville, Maryland.
For now, perinatal babesiosis is exceedingly rare, with only a handful of cases on record. In one incident reported in 2009, a mother in Monmouth County, New Jersey, brought a baby girl to the hospital, feverish and jaundiced, when she was 26 days old. The woman, who was a migrant crop worker, remembered being bitten by two ticks when she was about eight months pregnant, but she hadn’t been sick and dismissed the bites as unimportant. Luckily, the baby responded well to treatment.
Infections through blood banks are also raising concern. In 2007, in a case that rang alarm bells, a cancer patient in California arrived at the hospital weak and throwing up blood. Tests revealed babesiosis: He had been infected by blood from a man who had donated in Maine, say Van P. Ngo and Rachel Civen, M.D., epidemiologists at the Los Angeles County Department of Health who investigated the case. The FDA has since reported that over the past 10 years, babesiosis has infected more than 100 Americans via transfusions—and 11 of them have died.
These are tiny numbers compared with the more than 5 million people who receive transfusions in the United States each year. But there are almost certainly more cases than there would be if blood banks could effectively check for the parasite. Right now, donors merely complete a questionnaire that asks whether they have had babesiosis or unexplained fever. In one study in Connecticut, 1 out of every 100 donors who passed that screening was shown to be potentially infectious.
Federal regulators are struggling with how to protect the blood supply from babesiosis. The test used to diagnose individual patients is too labor-intensive and slow to be used on the millions of blood donations made every year, explains James P. AuBuchon, M.D., president of the Puget Sound Blood Center in Seattle and president of the American Association of Blood Banks. “Until a test is available, our hands are tied,” Leiby confirms. One encouraging sign: a pilot project by the Rhode Island Blood Center, which is setting aside about 3,000 units of blood yearly to be tested, creating a safe supply to send to hospitals for the most vulnerable patients.
The California patient, already seriously ill, died within two months of having babesiosis. Bernadette Durham and Jacqueline Moore survived. Yet both were profoundly ill, with long recovery times. More than two years later, Moore has regained the 15 pounds she lost and is working out again. But she still doesn’t have the energy of her pre-illness self.
She has also never regained her uncomplicated joy in the landscape she left New York City for. Although she knows how she got sick and knows how to protect herself, she has never hopped back over the garden wall to pick raspberries.
“Dr. Wormser said, ‘You can go back there when there is snow on the ground,'” Moore says. “I don’t live in fear—it’s not like when I first came home from the hospital, and I went around in boots up to my knees—but I check the kids and I spray myself with deet when I run. I feel I am in control of the risks now. But it took me two years to get to this point.”